Things that patients know about their health and the wealth of information they find online make input from patients valuable and meaningful. These patients are called e-patients.
An e-patient acronym:
Expand Participation by Allowing The Input of Evidence Not in Textbooks
Hopefully, you didn’t miss the exciting news for rheumatology e-patients acknowledging that by “pooling our knowledge and resources we aim to forge stronger links between healthcare professionals and patients that will in turn improve the management of arthritis…” This e-patient acronym was meant to go with that post. My daughters and I have been working on it.
Why wasn’t it posted with it?
It’s been a struggle to work with my shoulder this week. If you’ve read my RA onset story, you know that my shoulder flares go back 25 years. Five years ago, when my RA turned unrelenting, my shoulders went right after my feet. One night I awoke with sawing pain in both shoulders. For several months, I thought I might never fix my own hair again since I couldn’t put my arms over my head.
Eventually, I became able to do my hair a couple of times a month, but it often causes a few days of worsened flare. Monday night, the saw showed up again. We all probably have some kind of process we follow when pain gets bad. Immediately, I began taking my maximum doses of Lortab and ibuprofen on a schedule.
That got me though a couple days, not able to do much, but with manageable pain. By Thursday evening, I wondered whether my shoulder was still as bad. The side effects were getting annoying (itchy skin, sleepiness, and stomachache from constipation). I bet you guessed… I decided to skip my bedtime doses.
At four o’clock this morning, I became keenly aware of my error. Pain skipped past levels 7 and 8 while I slept. I thought I was having a baby in my shoulder.
Ever notice doctor appointments never coincide with the worst pain or swelling? It’s Murphy’s Law of Rheumatism.
I’ve never seen a doctor when it’s so bad. I thought to myself, maybe I should.
I could not go to my good GP today.
So, I found the website for “reservations” at the local mini-ER. I hesitated, filling out the page and then deleting it 3 times. The first appointment was not until 10 a.m. It was now six.
Crazy from tiredness and pain – I tried to see if I could survive without medicine a few more hours. I vacillated, doing deep breathing. The pain radiated down my arm and across my back. Alone in the dark, I admitted I was weak. At 6:50, I took a Lortab.
The ER doc did not find my shoulder convincing.
I started to cry when he left the room. What do they want? I kept crying. What else can we do?
Anyone could end up a patient like me
We watched the Sophie Scholl movie this afternoon. She said, “You will be standing where I am standing now.” It reminded me that I heard the callous ER doc behind the desk on the phone discussing the special school his children would be attending next fall. “He has children…” I thought, “Doesn’t he realize that one day his children will be sick?”
There is nothing I could have done to cause or avoid having RA. There is no way I can prove the agonizing pain and stiffness in my shoulder. Would he want his children to be believed?
For two years I’ve written my golden rule of medicine: Treat patients the way you’d want your mother to be treated. Today, I write its corollary: Care for patients the way you want your own children cared for.
See the new e-patient t-shirts and cups!
- More on the innovative idea of Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious. from Susannah Fox on e-patients.net
- Study on NIH site: The experiential health information processing model: supporting collaborative web-based patient education
- My previous post on successful of rheumatology e-patients in UAE and Canada: Positive Signs for Rheum Patient Activism